WHO HAS HEP C ?
YOU CAN NOT READ A BOOK BY IT'S COVER
TESTED POSITIVE, FEAR, STIGMA AND AN IRONIC FIELD OF WORK
By Seanna Williams, CSW
When I was first diagnosed, I was so sure I was going to die. I had read in a little tiny newspaper article that HCV led to liver failure and death. So, when my doctor told me, I figured I was a goner and got really depressed. My mother and partner were afraid but immediately researched it. I did not. I was too afraid to know.
During this time frame, I had to go to the dentist. This was a dentist I had seen a few times, but had no real history with. I thought I would do the responsible thing and tell him I had been diagnosed with HCV since I had last seen him. He literally put both hands up and took two steps back from me and told me, "Oh yes. I was going to call you and let you know I couldn't work on your teeth anymore as your roots are too long". I just stared at him and my first thought was, "I just came in for a cleaning, how freaking far under the gums do you go??" In the next second, I realized why he was saying this stupid, ignorant, uneducated thing. I turned around and went and sat in my car considering the ramifications of driving through his front window. I decided I did not want to scare the children in the waiting room. Then I cried. Then I felt shame, overwhelming shame.
I went and lay on my couch and didn't really move for three months. I had
to quit my job as I was working around chemicals and my doc had told me I
couldn't do it anymore. My partner finally persuaded me to go back to
school and finish my degree. I figured that it would be nice to die with a
college degree, and it would make my mother happy. I also became obsessed
with researching HCV and educated myself to the point of expert. I became less
afraid.
So after I got my Bachelors degree, my partner talked me into getting my masters
degree. I figured dying with a masters degree would REALLY make my mother
happy. I was educated but still somewhat afraid. My first year, I was
required to do an internship which I did at the Utah AIDS Foundation. When
I disclosed to other staff that I had HCV, the reaction was fabulous because
there was NO reaction!! Duh! It was the AIDS Foundation!!
I got my masters degree in social work and went to work for the
Utah AIDS Foundation where I met a lot of clients who also have HCV and
HIV. I got some perspective on my life and got on with it.
I may still die eventually of HCV, but God willing and science
providing; I figure I've got a pretty good shot. My liver biopsy (and that
experience is a whole other story having to do with Utah Valley Regional
Hospital not giving a mild sedative anxiety to "people who are former drug
addicts", like they just knew how I got it!) anyways, my biopsy was good,
no fibrosis, nothing to worry about. That was in 1997. The last year
I have been lax about blood work, but that is more due my own neurosis than any
bad experiences. Working in the HIV field, I have seen great strides with
stigma surrounding that disease. However, HCV seems to be where HIV/AIDS
was in the 1980's as far as the stigma and assumptions of how one contracted
"it". People seem to just "know" how you got
"it". There is a lot of work to be done to educated the masses,
and I am now very open about my diagnosis and often I will not elaborate on
"how" I got "it". It's irrelevant. What's relevant is
that I have it, I want a cure and I want it now. I want the government to
pay attention to me and I work to that end now. And yes, my mother is VERY
happy!
Seanna Williams CSW
seannawilliams@gmail.com
Dealing with Stigma
By Bruce Hatch
My name is Bruce Hatch. I’m from Salt Lake City, Utah. S.L.C is probably the least enlightened place in the place in the country, so disclosure over here is very difficult. Just a little background on me. I completed my 48 weeks of treatment on May 11 of this year. I tolerated the treatment fairly well, with a minimum of side effects. I started out telling only the people who had a "need to know." My mom, sister, wife and daughter. Got divorced, then I expanded to my employer. Lost my job and health insurance. Stopped drinking. Lost my friends who were drinkers. But I found the more educated I became about Hep C, the easier it was to disclose. I became comfortable telling people what they needed to know. No more unless they asked, at which point I would discuss Hep C in depth. The more I educated people, the more accepting they were of me. Part of me is Hep C, and if they want to enjoy what a fine person I am, they would have to accept that part of me also.
I recently have become a volunteer advocate for the Utah State Hep C advisory Council. I’m the only person on this board that has Hep C, but they are very accepting of me because they’re health professionals and work with Hep C and HIV folks. I have been discussing Hep C awareness in Utah and what could I do about it. The advisory council thinks I would make a wonderful poster boy, poster man? Poster boy sounds better doesn’t it? Anyway, I thought I had the self-doubts covered, with the way I had handled the disclosure up to now. To be a poster boy in a public awareness campaign though. The though petrified me. Do I want the whole world to know I’m a Hep C’er? I’ve been wrestling with the problem for about 2 months now and I’ve come to a logical conclusion. If my going public with this disease will help one person, then I can handle anything negative that might come my way. The people I’ve been working with, in the Hep C Community, are the finest people I’ve ever known. I can’t let them down. I can’t let myself down. Hep C awareness has become the driving force in my life, and disclosure comes with the territory. I guess my message would be: The more one knows about the disease the more intelligently one can discuss the disease. If someone can’t tolerate me because of my disease and my awareness campaign, piss on em'.
*Bruce is a cornerstone of the Salt Lake City Support Group and an avid Hep C Advocate.
MY STIGMAS, MY PAST, MY PRESENT
By, Mick Worthen
I, for one get very tired of answering the question, "how did you get Hep C?". I understand human curiosity however the question is, "how am I dealing with my Hep C? 99% who ask are convinced that you were an IV drug user or some ungodly pagan.
Why do they ask? Because I am open about being infected, I feel nothing to be ashamed of and I am hoping to create awareness about the virus. In my case their assumption that I contracted Hep C from IV drug use is most likely correct. When attending Film School in the early 1980's I injected cocaine in a drunken stupor, ended up in rehab for cocaine and was successful in quitting. However I continued on my merry way as a well seasoned alcoholic, directing award winning films and specializing in helicopter cinematography. For over a decade I earned the stigma of an alcoholic, talented filmmaker, semi-reliable cinematographer and crazy enough to do dangerous shooting from choppers quite well.
Then cometh the wake up call, in 1997 while hospitalized on an unrelated matter I requested an AIDS test due to my past behavior, I was AIDS free but was informed that I had Hepatitis C, "what's that?" I queried. My GI Doc. was very knowable about the virus and gave me a liver biopsy, thank God only fatty mostly from being a hard drinker. Decision time came, I was well enough to monitor it for a few years and hope for the wonder cure other than Interferon. That never happened, in 2005 my viral load went through the roof, I was Genotype 2 and the new biopsy was stage 0. Time to get er' done or wait to get worse and do 48 weeks of treatment than 24.
How am I dealing with it? I found the S.L.C Support Group, who directed me to the resources I needed to get treatment. (FYI: You should not drink hooch of any kind or amount when on treatment, give it up for six or so months before treatment!) I am on treatment at present. Got Hep C educated. Saw a need and started The Hepatitis C Awareness and Action Foundation, helping Amber Jarrett with the Group. Am using my filmmaking skills shooting an educational documentary and obtaining press coverage for Hep C awareness. Devoting my time when the virus and treatment allows me to open a flood gate of Hep C awareness and help my fellow humans be they infected or not.
I am more than happy to openly be honest about my past and my present.
I can say that I am not ashamed to carry the stigma of a former IV user and alcoholic who is a very active Hepatitis C advocate helping people one person at a time!
AND NOW FOR MY DEFENSE MECHANISM WHEN I AM SICK OF SCRUTINY.
HOW I THINK I GOT HEP C
By Mick Worthen
Shared leaches at medieval free health clinic.
Pin prick from Bush/Cheney 2004 button.
Ate home cooked dinner at Jeffery Dahlmer’s home.
Picked door #2 on Price is Right.
Alien abduction anal probe.
Bad purchase on E-Bay.
Trial virus protection program on my new PC expired.
Came free with new phone service bundle from the phone company.
Could not afford Hepatitis D.
Burning desire to join an exclusive club.
Body cavity search at security check point at the airport.
Guest appearance on "Jackass 2" dumpster-diving.
By Immaculate Infection.
Woke up rummy and put in my roommates dentures.
Sucking snake venom out of a Boy Scout.
Tough love at the Jesuit Boarding School.
Shared bed of nails at cheap boarding house.
Shooting up steroids to buff-up in case I got Hep C and had to do treatment.
Very creepy Communion at Easter Mass.
(The scary part is that some people people will believe the above!)
The following was first published in Hepatitis Magazine:
FEAR AND LOATHING
Some hepatitis patients encounter stigma, isolation.
By Bryan
Hepatitis
Not long ago, hepatitis magazine received the following e-mail: "I would like to subscribe to your magazine, but I don’t want to advertise my status to the entire world. The cover of your magazine is to prominent. Can you send the magazine in a brown wrapper?" Unfortunately, this is a question that the magazine staff has to answer on a regular basis from readers who fear being stigmatized by their friends, neighbors and even their families.
Jane, who asked us not to use her last name, is a mother of three grown children. When she remarried five years ago, her husband’s parents and sisters accepted her as part off the family. But she says that they began to treat her differently when she was diagnosed with hepatitis C in 2001. "He has two sisters who, if I walk into the room , treat me like I’m some diseased person," she says.
Even though she has been clear off the virus since responding to interferon/ribavirin treatment in 2002, Jane says her husband’s relatives still worry that she will infect him with the virus. "My husband’s family says that my husband is committing suicide by staying with me," she says.
Although her husband remains close to his relatives, Jane says she seldom speaks to them. "It takes one voice to make one comment – true or not – and that thing and that thing just manifests itself into being so many other things."she says of the family dynamics.
Jane says she also learned that one of her daughters-in-law has said she was afraid to let her children play with Jane for fear that she would give the virus to her grandchildren. Jane says that her struggle with the virus has changed her relationships with those closest to her. "It’s changed many things. I know that it has," she says," It’s not like it used to be. And that hurts."
Thelma Blaze of Beaumont, Texas, knows the toll that the stigma attached to hepatitis C can take on a family. Her granddaughter, Crystal Perry, contracted the virus at birth. Crystal appeared with her mother, Angela Perry, on the cover of the July-September 2004 issue of Hepatitis and died shortly after the issue was printed. Crystal had spent her 14th birthday in the hospital and succumbed to an infection and kidney failure while awaiting a liver transplant.
"People would ask me, "what did that child do to get hepatitis C?’ – like she was promiscuous or something, which she wasn’t," But people just assume that because she had hepatitis C that she did something wrong."
Ten foot pole
John Edwards, 48 was diagnosed with hepatitis C three years ago. He found that people started treating him differently when they found out about his illness. "I ran into a lady, an old friend of mine – we used to date," he says. "I ran into her for the first time in maybe 12 years. She said ‘How are you?’ I said, well I found out I have hepatitis C.’ She moved about ten feet away from me."
Edwards lives in Chaparral, N.M., a small community near the Texas state line, about 25 miles north of El Paso, Texas. A former truck driver, Edwards gets by on social security disability benefits. When he was first diagnosed, Edwards requested a free copy of Hepatitis magazine and found that he was not alone-that many hepatitis patients have the same questions and face similar physical, emotional and financial issues. "But never did it cross my mind then that I would have a problem with society," he says.
The general public seems to show a lack of compassion and understanding toward hepatitis patients, according to Edwards. "They don’t want anything to do with us," Edwards says. We’re a walking plague. I’m not going to say that’s true for everyone in the world, but the majority of people are totally negative toward it. I know it’s a bad thing to have, but it’s something people don’t need to be afraid of. I keep trying to explain that the only way you can contract it from me is blood- to- blood contact. Even that doesn’t put them at ease. They’re still leery of it."
Edwards recently began interferon\ribavirin treatment. While his family has been supportive, he says that many of his friends have deserted him. "Once they find out I’m on this treatment, a few of them – very few of them- have taken on a concern, but the majority that I’ve had have disappeared," he says.
Living in a small community, Edwards says that there is not a support group nearby. Without internet access, he says he has no means of meeting other hepatitis patients. Edwards, who is divorced, says that hepatitis C has made dating next to impossible. "It makes it hard on personal life, trying to find a life companion or girlfriend." He says, "because a healthy female will not want to put herself in a situation where she believes she will get hepatitis. It’s just a lonely life to lead now.
WORLDWIDE PROBLEM
The stigmatization of people with chronic hepatitis is not limited to the United States. Until recently, Chinese companies could refuse to hire applicants who tested positive for hepatitis B. According to the China Dailey, Zhang Xianzhu, who was refused employment by the Wuhu city government because he is a noninfectious hepatitis B carrier, won a job discrimination lawsuit in 2004.
Still, change is slow in coming. In January 2005, the Xinhua news agency reported a survey by the China Medical Association showing that 47 percent of the hepatitis interviewed expressed fear that they would lose their jobs if their employers knew about their infection. Of those surveyed, 61 percent said that the disease has had a bad influence with their spouses.
A similar study with English women with hepatitis C was reported in the Oct. 6, 2004 issue of nursing standard. The authors, Gillian Grundy and Nicholas Beeching, write, "It is clear that HCV has a significant effect on women. All the participants in this study had mixed emotions about counseling, testing an knowing about their diagnosis. All had anxieties about social stigma, viral transmission, longevity and concerns about treatment."
Similar concerns were expressed to Hepatitis magazine in an e-mail from a reader who lives in Spain. This reader, who prefers to remain anonymous, wrote that she was drugged, abducted and assaulted in February 2005. After reporting the crime, she was tested for several communicable diseases and found that she had the hepatitis C antibody. She does not know yet whether she has chronic hepatitis C. Aside from her doctor, she has told only one trusted friend about the test result. "I can’t tekk anyone around here, as I know I will be shunned by society," she writes.
Changing attitudes
Some hepatitis C patients think that increased education about the virus will improve public attitudes. "They should teach something in school, some kind of awareness program," says Edwards. He says that he saved an article in hepatitis magazine which stated that hepatitis can be transmitted only through blood-to-blood contact. He says, "If anybody ever questions it again, I’m going to show them: ‘Look, I’m not contagious. I’m not a walking germ.’ Maybe that will help people understand that it’s not something to dread or fear."
Jane, who leads a hepatitis C support group in the Houston area, says that her support group discussed stereotypes at a recent meeting. "The media doesn’t help us much." She says.
Jane says that her support group discussed the billboards that have appeared in Houston with pictures of syringes and the message, "It’s in the works," to warn injecting drug users about the dangers of spreading hepatitis C through shared needles and drug paraphernalia . "For me, it kind of says that (I if you have hepatitis C) your somebody who is a junkie and uses needles." Jane says. "But then I heard something at our last meeting about it. It kind of went two different ways. The (members) who thought it was quite humorous and the truth were ex-drug users."
The group also discussed the ads run by Roche showing a man with a beat up face ad the message, "If hep C was attacking your face instead of your liver, you’d do something about it." "We did have a big conversation on that. At first when I saw that I thought, ‘Oh man, that’s scary too.’ But then again the whole point was that if you could see from the outside what hepatitis C could be doing to you, wouldn’t you do something about it? I think for someone with (hepatitis C), it was a positive thing. I guess it just depends on who’s going to see (the ad) that doesn’t have it that goes, ‘Ahhh!) Jane says. But I think in general, that is the way people look at you when you have it.
Jane became a support group facilitator after clearing the virus. She says that her ordeal from the virus and the treatment left her with a desire to help others. "I believe that hepatitis C made me a better person," she says. "It made me change some things in my life that need to be changed. It brought out more of that doing-things-for-others side of me."
Doing things for others, whether it is her children, her support group or her church, is how Jane tries to change people’s attitudes. "Hopefully we can someday fix things where people don’t make other people feel so humiliated and ashamed, because that’s no way to live." She says.
Although the stigmatization of those with chronic hepatitis is widespread, the good news is that the problem might not be as bad as many patients might think. In 2003, a nationwide survey commissioned by the American Gastroenterological Association found that 74 percent of people with hepatitis C believe that most people associate the disease with drug use or unhealthy lifestyles, but in fact only 30 percent of the general public hold this belief.
These statistics, while encouraging, do little to comfort patients like Edwards who hace to deal with social stigma on a daily basis. "It’s just another thing we (hepatitis patients) don’t need with." He says, "because a lot of us are depressed already."
